As Lyme disease plagues NJ, a new push to fight it

There’s good news for New Jerseyans suffering with Lyme disease, and those who may be exposed to it in the future.

Congress has passed the 21st Century Cures Act, which calls for the establishment of a Lyme disease working group comprising 14 federal officials, patient advocates and doctors specializing in treating Lyme.

Pat Smith, president of the Lyme Disease Association based in Wall, said this is a very positive development because Lyme literate physicians “have a whole different perspective on the disease."

"They are able to really see from large numbers of patients that they treat what is really happening with Lyme.”

An ongoing controversy surrounding the tick-borne illness revolves around whether it is a continuing infection after short-term treatment.

Smith said there is a lot of scientific evidence showing the infection does persist, but “there are groups out there, especially the Infectious Disease Society of America, who say that is not the case. They say Lyme is hard to catch and easy to cure with a few weeks of antibiotics.”

She stressed what we know to be true is “a percentage of individuals, which could be 20 percent or even more, go on to have symptoms.”

Less than 50 percent of those who get Lyme have the classic bull's-eye rash, so it may be difficult to recognize for others.

“Sometimes people experience a flu-like illness with joint pain and muscle pain and joint swelling or stiffness and you may get a fever,” she said.

In some cases, however, you can develop “severe neurological problems with Lyme and you can get numbness and tingling, and you can even develop seizures.”

According the CDC, New Jersey now has the second most Lyme disease cases in the nation, right after Pennsylvania.

She explained experts have determined the official number of reported cases only represents about 10 percent of the actual number of patients suffering with the disease, so “in 2015 New Jersey had 4,855 reported cases, but that means in actuality we had 48,550 cases.”

Across the country there are an estimated 400,000 cases, but most of them are in the northeast.

Smith said the Lyme disease controversy has dragged on because different federal agencies have simply not paid adequate attention to new research that shows the bacteria persists after treatment in some individuals.

She stressed some individuals with Lyme may eventually develop psychiatric symptoms, so it’s extremely important to find a Lyme-literate physician if you suspect you may have the disease.